Firefighters rally to make Killamarsh girl's life '˜that bit more special'

A huge fundraising effort is underway to help a Killamarsh teenager who has a rare genetic condition.

Wednesday, 12th July 2017, 3:59 pm
Updated Tuesday, 18th July 2017, 8:41 am
16-year-old Olivia Windle who has juvenile batten disease.

16-year-old Olivia Windle has a life-limiting neurodegenerative condition called juvenile Batten disease for which there is no known cure.

Since her diagnosis in 2009, the once perfectly-healthy girl has lost her sight, suffers from seizures and is beginning to lose the ability to walk.

Now, a team of firefighters is to take part in a ‘screwball rally’ to help make Olivia’s life ‘that little bit more special’.

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Olivia was diagnosed at the age of seven.

Her mum, Michelle, said: “When we first heard about Batten’s disease I didn’t know what it was - our lives were turned upside down.

“Olivia was a normal seven-year-old playing with her friends and her dolls.

“Then she started saying she couldn’t see the lines on a page or her friends in the playground.”

The firefighters got involved after hearing about Olivia’s story through Michelle’s mum who works at Northern General Hospital.

There is no known cure for the illness Olivia has.

They do the rally every year for a different charity and this year decided to donate the money raised to Olivia.

Olivia lives in Killamarsh with mum Michelle, dad Russell, 42, and brothers Harrison, 13, and Finley, 4.

Michelle, 41, is under no illusions that this is just the beginning of a long journey and other symptoms will inevitably occur.

“There are times when I could just sit in a cupboard and cry but we try to take each day as it comes,” she says.

Olivia loves to dance and listen to music and is a big Harry Potter fan.

“The people of Killamarsh have been amazing in supporting us as a family through both the good and the bad times.”

The money raised will go towards a new wheelchair, a walker, a rise and recline chair and a wet room - all of which will help will hopefully allow Olivia to live her life to the full.

“The new equipment will make a massive change to Olivia’s life,” says Michelle.

“She needs a specialist wheelchair to help her posture and the wet room would give her more independence.”

Olivia can no longer see, has seizures and is beginning to lose the ability to walk.

Sadly, there is no current cure for Batten disease and the life expectancy of someone with the condition is between 15 and 35.

Despite this, Olivia still loves to dance, is a huge Harry Potter fan and loves listening to music on her iPod, especially Westlife.

Olivia’s fund currently stands at just over £1,500 - around half way to the £3,000 target the firefighters have set themselves.

As well as the screwball rally, the dance group Olivia has attended since she was five are to hold a ‘danceathon’ this Saturday, at St Michael’s Church on Lowedges in Sheffield.

If you would like to contribute to Olivia’s fund, visit www.justgiving.com/crowdfunding/OliviaSBRally.

More information on Batten disease can be found by visiting the website at: www.bdfa-uk.org.uk.

Olivia was diagnosed at the age of seven.
There is no known cure for the illness Olivia has.
Olivia loves to dance and listen to music and is a big Harry Potter fan.
Olivia can no longer see, has seizures and is beginning to lose the ability to walk.